Homecoming

For years, and especially as he entered his nineties, my father kept begging me not to "dump" him into a nursing home. He had seen too many of his cronies abandoned in this way by family members; his visits with these friends left him feeling depressed and hopeless for days. I assured Dad that I'd never put him in a facility.

It was an easy promise to make. I didn't want him in a One Flew Over the Cuckoo's Nest setting with a Nurse Ratched supervising his care. I didn't want him waking up at night disoriented and lonely. Because he was inching closer to death, the greatest unknown, I didn't want a facility, with all of its unknowns, to replace his familiar apartment, which I'd been sharing with him for more than a decade.

But in spring of last year, six weeks after Dad turned ninety-eight, I broke my promise.

I felt that I had no choice. He was doing bizarre things--urinating on my bedroom carpet, trying to get on the exercise bike in the living room "to take a ride down the street." And he was saying bizarre things--blaming his hypoglycemia on no longer being able to drive, and his panic attacks on the death of "Uncle Joe" (he has no Uncle Joe). At night he'd get up every ninety minutes to complain about imaginary problems or search for monsters he "knew" were lurking in his closet or under his bed; his behavior left me tired and drained.

Dad's nursing home turned out not to be as horrible as I had imagined. In many ways, it was a pleasant place. Unlike some facilities, it didn't reek of urine; the carpet was clean. The aides referred to the residents not as "the Alzheimer's woman in 210" or the "Parkinson's man in 304" but by their names--in my dad's case, Mr. Mort. (In fact, one aide lovingly called him "Morton Salt.")

Still, it wasn't home. Alarms rang every time Dad twisted in bed or shifted in his wheelchair. He had to wait for someone to take him to the bathroom. Although the food was good, the dining hall echoed with coughs, sneezes, moans and groans. Many of the residents had hopeless eyes and unsmiling mouths.

I spent each day with Dad, from 8:30 am to 6:30 pm. The worst moment of the day was when I left. Our goodbyes were heartbreaking--endless repetitions of "I love you," countless hugs and kisses. Then I'd make the thirty-minute drive home to Pittsburgh from the small community of Oakmont, crying all the way. My adult children (one in Manhattan, the other in Vancouver) feared for my safety.

Once I was back home--in the same apartment that Dad and Mom had shared for decades until she died--I couldn't get comfortable. I'd turn on my computer to answer emails, but the screensaver was a photo of Dad; each time I saw it, my heart ached anew. I couldn't sit in the most comfortable living-room chair, because it had been Dad's.

I'd stand outside of his bedroom, questioning my decision: I'm sure that I had many meltdown moments as a child, yet Dad never sent me away. Dad had been there my entire life--giving me emotional support when I was the only high-school senior not invited to the prom, giving me financial support when my ex-husband reneged on child support, driving 300 miles to come cook, clean and care for his grandchildren when I was ill.

He never abandoned me. Why, then, have I sent him away?

These questions tormented me. So did the answers: Because caregiving is hard. Because, at sixty-seven, I don't have the energy to pull all-nighters and still function the next day. Because I've never had a lot of patience.

Despite my doubts, though, it wasn't a change of heart that forced me to bring Dad back home. It was money, pure and simple.

After three months, the facility's $250 daily rate became too much for Dad's finances. Like many middle-class people, he had saved too much money to qualify for Medicaid, but not enough to pay for the facility. Medicaid would have kicked in once Dad depleted his life savings, but he deeply wanted that money to be his financial legacy to me--to help ease the burden of my own aging. He also had no long-term care insurance. The responsibility to pay would rest first with him, then with me. I faced a harsh choice: to deplete both of our nest eggs to pay for the facility, or to bring him back home.

I feared that keeping him in the facility would eventually land me in a homeless shelter; I feared that bringing him home would land me in a psychiatric unit. I chose the latter because, despite its psychological hazards, I believed that Dad deserved to spend his remaining time in his own home.

The nursing-facility staff prepared me for Dad's homecoming. They taught me practical skills--a better way to lift him from his wheelchair, how finely to cut his food in order to keep him from choking, the trick to putting his pressure socks on him without ripping them. These tips made our life together much easier.

Also, three months of daily facility visits had shifted my perspective. I realized that, but for fortune, Dad might have been like some of the other residents: the former mechanical engineer who had, due to Alzheimer's, spent years sitting unresponsively in a wheelchair; the once successful doctor who had a feeding tube and could never again taste real food.

Luckily, Dad is neither of those. He's still my father--except when, as frequently happens, he becomes a stranger. At those moments, I wait in silence for him to return, or I gently prod his memory with stories of the past; then Dad comes back to me.

I feel more comfortable now with the stresses and strains of living with him. I've resolved to take things one day--one minute--at a time, and to cherish every second we have together. It's working so far, and I no longer worry about its mental or emotional toll on me.

Now, no matter what challenges we've faced during the day, Dad and I choose to end it with a few minutes together.

I lie next to him in his hospital bed, and for about ten minutes we talk about the past or just rest in congenial silence. It means a lot to me to be able to have this time together--to let the love we've always shared wash over us and remind us that we're still a father/daughter team. When I give Dad a final hug and kiss before leaving, I feel refreshed, knowing that bringing him home was the right decision and that I have enough love for him to make it through however many days we'll be fortunate enough to share.

Postscript

On November 1 of last year, not long after I'd written this essay, my beloved father died at home, in his own bedroom, with me by his side.

About the author:

Ronna Edelstein is a part-time English Department faculty member at the University of Pittsburgh, where she works as a consultant in the Writing Center and teaches a section of freshman programs. Her work has appeared in Quality Women's Fiction (QWF); SLAB--Sound and Literary Artbook; The First Line and The Road to Elsewhere (Scribes Valley Publishing). Many of her personal narratives, essays and poems have appeared in the Pittsburgh Post-Gazette. Ronna dedicates this story to her children, Ilana and Jonathan, and, in memory, to Mom and Dad.

Comments

Dr. Edelstein, I just read your post of July 25th. It was included in the clipping service of LeadingAge. I would like to say so many things! First, I hope that your presence, your faithfulness and your services for your dad have been a source of comfort since his death. Second, we MUST make our nursing homes HOME! The Culture Change movement is precisely about that. The present system is lethal to staff and to residents AND to family members. Keep writing and use the pen to fight for this necessary change. Help other family members (as well as ourselves in the future) avoid what you and your dad experienced.

Beautiful article and so relevant since that's exactly what just happened to our 90 year old mother. Made difficult decision to put her in a small memory care facility when we were unable to care for her at home. After 9 months of experiencing same thing as you, decided to bring her back home with assistance from caregivers where she peacefully passed several months later. So happy that was her last memory not in a hospital or sterile facility. Thanks for sharing your experience.

I appreciate the heartfelt comments and the love and care Ronna has shown for her father. But for some people, giving the care the person needs at home is just not an option. And only his assets would be depleted, not hers, by his nursing home stay. Yes, it would have been what he intended for her, but unfortunately that's our system these days. Some people just aren't in a position to do what she did. We need universal long-term care insurance set up just like Medicare through payroll deductions and include home health care and personal assistance so that people can live and die at home. If your family member is in a nursing home, make sure you advocate for him/her, making sure that they get the care they deserve. Don't hesitate to bring any problems to the administration and stay with it until they are resolved to your satisfaction. All people deserve not just good bed and body care but optimal, humane care.

Perhaps you have a decent facility in your area but in ours the administrators seem to change rapidly as does staff and many of whom do not speak English. A total revamping of our system is necessary but it will have to begin with society's change in view from worshiping youth to respecting the elderly. As it now stands, it's a lose-lose situation and bleak end of life. Yes, all people do deserve humane care, and our current system does not offer it. It is all about the money and not quality end of life.

You affirm my earlier statement that the present system is lethal to staff and to residents. Thus the high turn over in a typical, traditional institutional nursing home that is not HOME. I encourage you to learn about what is happening by visiting www.culturechangenow.com. (I have no financial connection at all. I just love their values and their work!)

Thank you so much for a beautiful story that touched me so deeply. I live in my home with my two elderly parents, Dad is 92, Mom 90. They have been together for over 75 years. When Hospice first admitted mom they asked what her greatest wish was. She said not to be separated from Dad. Last week they delivered two hospital beds, one for each that I bungied together like a king sized bed. Although they are sometimes a challenge, my sibslings will never know the little joys they bring and the grace that is in the home each day. I am fortunate to have aides to help while I work. I couldn't do without. You are truly a gift and a remarkable daughter. God Bless you and your Dad.

I am overwhelmed with your accurate description of how I also felt when helping my parents in their last days and hours of life. As a practicing physician, I struggled with providing dignity and a sense of calm. Your words of "cherishing those moments we had together" although they were in the hospital or in the geriatric facility ring true..the guilt is overwhelming but the heartfelt sharing and saying good by help ease the disturbing fact they never abandoned me in my entire life and in a sense, I abandoned them by not bringing them home.

You words are helpful to a point. My 75 year old wife has late stage dementia. Once an attorney. Tragic to watch because she does not know the address of our condo or the month or the neighbors' names. She only wants to wander. Incontinent; the Depends must be changed frequently. I have help Monday - Friday. She sleeps poorly at night and I am up. The doors are locked. I am tired. The people at the nearby facilities are kind and nice. It think it is time to say good bye.

Simply superb and a great narration. Thank you for sharing. I had tears in my eyes as I was reading through. I feel you are extremely lucky to have a such a great bonding with your father and you were able to care for him till the end and still able to enjoy your relationship with him. You are truly blessed.

I loved my grand pa more than anything, he raised me and was like a father to me. He suffered from Alzeimer's and he did not recognize me at the end. Being a physician myself, I could not make a change in his suffering.He passed away begining of the year. I only pray to God that he rests in peace.

Swetha, my father and I were lucky to have such a bond. Yesterday marked the nine-month anniversary of his passing; the grief is still very strong and real. I pray that both he and your grandpa are at peace.

Thank you for writing this very moving essay. In in the not-so-distant future, I will be facing some very difficult decisions regarding my parents and your verbalization of your experience really helps me to not feel so alone with my doubts and fears. Thank you. AKK

What a beautiful and accurate story of what so many go through. Thank you for sharing this deeply personal and painful experience with us, and of the generous gift you reciprocated to your Dad.

Hopefully, your story will help change the US' perspective on how we treat the elderly.

I had gone through a very similar situation but, due to my own chronic and debilitating illness could not bring my Mom home as I could barely care for myself. Neither of us wanted her to be in a facility. In all honesty, I think she died of a broken heart.

Truly, we need better ways to handle these situations than to force people into poverty or into institutions that are more like prisons than homes for those who need extra TLC. I pray we soon find the answers so everyone --- caregiver and the one needing care --- can have some type of quality life.

Thank you again for sharing this and from your heart. It has deeply touched me.

This post brought me to tears as I struggle with helping my parents cope with caring for each other under difficult circumstances, their being stubborn and impatient and me being 2,000 miles away. May we be able to navigate the process with the compassion shown in this piece.

I am grateful that I was able to be with my dad in the same city and apartment for the last 12 years of his life. Living far away makes everything so much more difficult. You have my prayers as you struggle to support your parents--and take care of yourself.